Tuesday, November 27, 2012

Bumps in the road

So November was a busy month for us. Audrey continued to have oozing from her PICC line so her team of doctors decided placing a new, more permenat line would be best for her. Due to her glucose/ fluid issues she had to go into the hospital the day before surgery to stop her feeds. Her surgery was done on November 7th. This was the 8th time she had been under anesthesia this year. Since she's 3 now she's more verbal and knows what she does and more importantly what she does not want. So per op scared her until she got her happy medicine (versed makes her chuckle). Once she woke up in recovery she was not happy! She wouldn't look at or talk to anyone. She was also vey pale and drowsy. She ended up needing another blood transfusion and was eventually sent home on half strength feeds again. We thought we were in the clear now. Then, not even a week later her new line starts bleeding! Not again! After a quick trip to visit the surgeon it's determined the line is fine so it must be Audrey. We are waiting to hear back from her pediatrician about her work up for bleeding problems.

Audrey had her post tonsillectomy sleep study. The good news is she has no more obstruction! Yay! Unfortunately she still had some desats during sleep so she will stay on her 1/4L. She is also still needing her o2 during the day. We can't wait to get rid of oxygen!

This month Audrey added a new GI doctor to her team. We have high hopes we will get her to a better place and off TPN. Since her broviac surgery, Audrey has not yet been able to tolerate full strength formula. while meeting with her new doc we discussed changing out her GJ tube. GJ's are usually good for 3-6 months. Since we don't want her without it, the plan is to change it every 3 months though it's already been 4. So plans were made to change it out which is done in interventional radiology. Low and behold, the very next day her tube broke!! Some girls have all the luck! With some finagling, she was able to get it changed the next day. Unfortunately, anytime we touch her tummy it freezes in terror. So she slept through thanksgiving and black Friday barely tolerating a low rate of pedialyte. Now we are back to her normal rate but still half strength formula. Right now we are very thankful for TPN!

So this is where we are. She is once again sleeping a lot. Most days she is only able to go up the stairs halfway and then struggles to crawl the rest. Today I noticed her leg muscles are getting weaker. She was barely able to lift her leg up for me to put her sock on. Is this disease progression? Is this just a result of excessive sleep and muscle loss? Is it from her decrease in feeding tolerance? I'm not sure what the answer is or what we do for now. For now I'm just loving my girl and her brother, trying to take advantage of her fun and spunky self.

Driving into work today I was listening to a Talor Swift/BOB song. The chorus she sings really caught me: "I wish I was strong enough to lift not one but both of us. Someday I will be strong enough to lift not one but both of us." This is my hope for my girl. Some day Miss
Audrey, we will beat this awful disease!

Here are some pictures of November in a nutshell...grouchy post op, pink sleepy head after blood, new big girl bed, bleeding and bruising, sleep study, g-tube turkey and post thanksgiving laziness